Sharing the love, writing the words

I am 1 in 10

Saturday night. I was out with my family, dancing, singing, loads of laughing… having an absolute ball. It was the perfect end to a huge week of celebrations for us as I had just gotten married the week prior so we were all still on a high and loving it.

I lay there for a bit, pulling my knees into my chest and curling into a ball trying to get comfortable until I end up whimpering so much that my husband gets up and heads to the kitchen to warm up my heat pack without question. He knows this scene all too well.

From here I will stay in bed most of the day, with my heat packs in constant rotation and multiple cups of tea by my bedside. Some days the pains will catch me off guard and I can be found crouching on the kitchen floor or the bathroom tiles waiting for the pain to go before I can walk again. Yes, walking. Just standing or walking is a challenge when the pains come through. So, I just park myself where possible until it dies down for a bit and I can move back to bed before the next wave of pain hits.

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This is standard practice when living with Endometriosis, a condition where tissue similar to the lining of the womb grows outside it into other parts of the body, resulting in painful spasms and some fertility issues amongst other things. I’m not alone with this disease as it affects 1 in 10 women and, so far, there is no known cure.

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I’ve lived with endometriosis my entire adult life from the age of 17. Over the years, I’ve had 4 laparoscopy procedures to remove the endo – these are performed through keyhole surgery and each operation normally gives you a couple of pain-free years (if you’re lucky) before the endo grows back again. Yes. It comes back. Isn’t that a neat trick!

Endo is a condition which generally cannot be seen from the outside and it’s hard to explain to people who have never heard of it. The sceptical look on some people’s faces when you try to describe it? You can just tell they’re thinking “So… you’ve got some period pains?”

It’s more than that.

You can’t move, can’t walk, can’t focus on anything else other than trying to get rid of that pain.

Take painkillers you say? I wish. I’ve tried so many different forms and nothing works. It’s such a deep, difficult pain to feel. And to describe it… it’s like a thousand daggers just slicing through your internal organs non-stop. With fire.

In terms of ongoing medication, I was on the contraceptive pill for 17 years after being told by numerous doctors and experts that “being on the pill diminishes the pain of endo”. So of course, I stayed on the pill, thinking if my pain was this bad when I’m on the pill then surely it would be worse if I went off it. For years I struggled with monthly pains which were sometimes so bad that I couldn’t get out of bed. It was horrible.

It got to a point where my gynecologist advised me to skip my period each month and only have a period 2 – 3 times a year. I took his advice and at first the pains did go away. But soon after I was still getting pains each month even though I was skipping my periods.

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Years ago, I started researching endo/the pill a bit more and I made the decision to go off the pill. My GP advised against it and wanted to keep me on it “just in case” but I didn’t feel right. After being on the pill for 17 years I felt like my body deserved a break. So, I stopped. And I waited for the pains.

Amazingly, the first few monthly pains reduced ever so slightly. Yes, I was now having a period every month instead of a few each year but the decreased pain levels were a win. Now that I’ve been off the pill for a couple of years, my body has gotten used to it and each period is different to the next. One will be quite painful and the next one will be not so much. This result isn’t what you normally hear but I’ve learnt that there’s not a one-size-fits-all remedy so if you’ve done your time with one thing and want to try another then go for it. It’s your body after all, you’re the one that has to live in it.

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So why am I finally telling my #endostory? Because of the Worldwide EndoMarch campaign which aims to funds for further research and to also raise awareness of the condition.

I’m not telling my story for people to feel sorry for me. I’m not doing it to gain anything for myself. I’m doing it in case it helps just one other girl out there who is struggling and doesn’t know what to do, someone who can’t get a straight answer from a doctor, someone who just needs to know that they are not alone and there are other people they can talk to. I think it’s important for women to feel comfortable to talk about this sort of stuff. It’s very normal for most of us and that’s ok.

When you’ve got something like this that literally comes around every 4 weeks, and can take days to recover from, it can be very hard to shake it off and return to normal life without feeling down. It gets to you! Don’t forget all the other usual things that come along with having a period – mood swings, headaches, depression, fatigue – yep you still get all those bad boys on top of those debilitating pains. What a combo! So it’s ok that we feel like we’re going to explode with rage at any moment. There’s a lot of shit going on.

Endo can be hard to predict. It’s not easy to live with and it can be extremely draining on your personality but I try to stay positive and be the best version of myself when I can.

If you want more information about Endometriosis or if you wish to donate to further research into this condition, head to www.endometriosisaustralia.org

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Hey guys! Quick note… don’t forget that I’m no expert or medical professional but having lived with the condition going on 16 years I know what works for me. The story and advice I’ve given here is based off my own experience so make sure you chat to your doctor or medical professional when seeking advice.

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